Sam. Conqueror. Overcomer.

On the 15th May 2009, Samuel Christian made his way into this world...two month's premature and in severe respiratory distress. Within hours, Sam was diagnosed with Rubinstein-Taybi Syndrome - a very rare congenital disorder, of which little was known. The diagnosis together with the immediate challenges Sam faced to thrive became our core focus and it was with joy and thankfulness that we eventually brought Sam home, after nine weeks in the NICU.

As time pressed on, it became obvious that Sam's development was falling behind that of his RTS peers. Shortly before his 5th birthday Sam underwent a brain scan and it was confirmed by a paediatric neurologist that in addition to Rubinstein-Taybi Syndrome, Sam also has Cerebral Palsy related to his premature birth, as well as Autism.

This blog chronicles our journey through these challenges...
Our world has crashed, been blown apart.
This can't be happening....why us? Why now?
Your fragile life shaken before it could barely start,
How do we get through this...please, Lord, tell us how?

Drowning in our sorrow, waiting for answers that just don't come.
Our baby "special needs"? It simply can't be true!
The heartache overwhelms us, we're left feeling cold and numb.
The diagnosis tells us little - these children are so few.

But then we finallyget to touch you, to see your precious face
And all the heartache and questions fade, replaced with love and pride.
It's obvious from the very start you're showered in God's grace,
And with His love and guidance, we'll take this challenge in stride.

When once we couldn't pronounce it, Rubinstein-Taybi's become our norm.
When once the future seemed dark, we now welcome the journey as having an RTS angel brings lessons in unexpected form.

Our world has crashed, been blown apart!
This IS us.....right now!
We've been blessed with a gift, so precious from the very start. How do we get through this? Here's how.....
By believing in a God, so merciful and great,
By trusting that He's right beside us as we journey through the narrow gate.
By believing His love for us is not determined by a human frame,
By trusting that we draw Him near by merely calling His name. This precious baby we asked God for,
Prayed he'd be perfect and complete.
And, as Samuel means "God hears", He's laid His answer at our feet.

(Nicky de Beer : 27/05/2010)

Saturday, September 4, 2010


I thought of starting this post off with "What a week we've had...." but we've done that one already, so how about "What a MONTH we've had...." or rather "What TWO MONTHS we've had..." but does it really matter? Yeah, yeah...we've been through a rough patch again...who hasn't, right? But, as debilitating and (seemingly) impossible as what the challenges might have been, it's really what you take away from it that counts!

So, let's start this one with.....WHAT AN AWESOME LESSON I LEARNT RECENTLY!

As far as what my memory serves me (which isn't saying much these days -but let's pretend I can still occasionally remember an important fact or two like my name, telephone number, how many kids I have....two kids, right? Or is that four? Three? Okay, Okay...I know it's somewhere between two and five...although with all that quarelling it could well be TEN!) Anyway, where was far as what my memory serves me (hehehe) I don't remember a time since Sam's birth when I truly felt hopeless...defeated...and if any situation was going to make you feel that way, surely having a child with more challenging needs would have done it? Alas, this has not been the case with our family and although I feel it best not to go into any detail, we were faced with a situation which left me with those very feelings....hopeless....defeated.....and only now that the cause has eased off a little (temporary though it might be) and I have found myself in a stronger state of mind, can I actually reflect on it although now with a shadow of shame and guilt.

The "situation" (I have to apologise - you must be dying to know the details...maybe one day) has played itself out over a long period of time, but recently came to a pinnacle point. On it's own it would have been a struggle worthy of a World War title....but more devastating is that the major player involved goes by the label of Christian. The situation left me feeling absolutely, completely powerless...isn't that how you would feel if the power to protect your baby was taken away from you? I am not too self-righteous to admit there have been times when I have asked why God does not seem to hear our prayers...our pleas for help...but this was just on a completely different level. Whereas, as heartbreaking as it sometimes is, I do believe that Samuel is every inch the tiny person God meant for him to be in order for him to fulfill a glorious purpose here on Earth but I could just not find any possible reason for why He would allow this kind of tribulation.

Selwyn Hughes says that Christians sometimes nail themselves to a cross and how accurate he is...we chastise ourselves for something, long past the Lord's ultimate gift of forgiveness...and not only does this distance us from Him, but serves no purpose as we self-inflict a sentence already borne in sacrifice by His own Son. Well just as I was wondering if it isn't, rather surrender my own Christian identity as opposed to having to fight Satan for the right to keep it, I realised a fundamental error I had made....failing to give up control of the situation because I believed that He had done just that. And then I doubted whether I still deserved His Grace after having committed a fundamental error in faith. Over those couple of days I cannot tell you how many "coincidental messages" I received reminding me that He NEVER leaves us, even though our troubles sometimes cloud our ability to see Him there and I have to express how vital it is to have friends and a fellowship-family whose beliefs mirror your own.

So...the "situation" is still not yet resolved and will take some time to be so, if ever...but our Smurf is FINALLY on the mend which is such an AMAZING blessing to be thankful for. On top of everything else (as if a kidney infection is not enough) Sam decided to bring a little gastro home from the hospital, which was promptly shared with first myself, then Luke and finally on Thursday afternoon with Meghan. And how is this for a "The Joys of Being a Mom" moment...Luke and Meg were both flatout for at least twenty-four hours with the bug, both nauseous and suffering excruciating stomach cramps combined with a delightful fever and complete loss of appetite, much like the symptoms Sam and I had. On Friday afternoon Luke asked me "Why didn't you have to stay in bed when you had the bug?" have GOT to be kidding! Uuuhhmmmm, let's see Luke...I was contemplating flopping down onto the bed when the cramps and nauseau made it almost impossible to stand up straight, but then I thought of the unwashed baby bottles, unmade Nestargel, unwearably filthy clothes, unmade dinner, etc etc and suddenly the wave of jealousy at who was going to steal my daily pleasure of carrying out these chores completely washed over the wave of nauseau!

Back to our little Smurf who - when the tummy bug first settled in, went off his food and then eventually (for a whole day) went off his milk - finally has some sign of his appetite returning. I tested his urine yesterday and it was completely clear, which is also wonderful. His nose is still a little snotty and congested but hopefully that will clear soon too. The teething is just another issue on its own, although I fear I might be to blame. I distinctly remember a few posts ago saying wouldn't it be great if Sam cut all his teeth in three's! Boy, this would be one of those times when my short-term memory loss wouldn't be a bad thing. Well it looks like Sam's been reading his own blog because...low and behold...that's exactly what's happening again! The little smurf's gums are completely red and swollen, seemingly everywhere. And not that he ever really LOVED going to the shops, but he has developed an utter aversion to being in a shop...which usually plays out in the most hysterical screaming fit. But he remains so completely and heartwarmingly adorable with his little sing-song voice, no-longer-toothless smile and ever-searching fingers for the closest, unsuspecting mouth.

Luke's rendition of Sammy Smurf

Sam's unrelentless attempts to get his hand in someone...ANYONE'S....mouth is not just reserved for friends or family, even the nurses at the hospital are not safe from those little prying fingers (and we wonder how he landed up with a tummy bug in a hospital after exercising such wonderfully hygenic practices).


  1. Hi Nicky
    Once again your humour and zest for life is so evident and the picture so clear. Yes we humans have to constantly remind ourselves that HE already died for us and carried the cross, so all we have to do is just LET HIM. It takes a long time to finally get it that when we have God in our lives it becomes so much easier to even accept the difficult situations we face because we will find the lessons that we have to learn. Luke is quite the cartoonist, another hidden talent just like his Mom who is a very accomplished writer. So glad to hear that Sam is on the mend and Luke and Meghan who shared the bugs are also better..... love the part about why you never HAD to stay in bed ....that is so teenage. Just goes to show that things happen at home and some mysterious body sort of goes around like Mr Muscle and it is done in seconds....lots of love to you all

  2. Very insightful Nicky...

    I really want to comment on the finger in the mouth thing. Nathan is 2.5 yrs. old and still does it. I love it, it's just part of who he is! I have to remember to keep his nails short, otherwise it hurts! I know so many other RTS kiddos do this too. I truthfully think it has to do with language...or just plain out curiosity. Whatever it is, I love it!

    Hope the tummy bug is long gone from your house by now! Hugs

  3. Hi Aunty Anthea - Thank you so much for your avid reading of Sam's blog and, of course, all your wonderful comments. Luv to you all too xxx

    Brandi - I am so glad to hear that Sam's "mouth mining" is not THAT weird after all. I too have to constantly make sure his nails are short as he has on several occasions drawn blood. I also think it could be language-relatd...its almost as if Sam is trying to FEEL us speak. When we plays on the keyboard, he takes a break every couple of minutes from bashing the poor keys to smithereens, to put his hands on the speakers...again as if he's trying to feel the music.

    Heaps o' Hugs to both of you!